Autism: Turning on the Light - A Father Shares His Son's Inspirational Life's Journey through Autism by Keith Ambersley, eBook 2013; an Extended Review with < My Thoughts > by Sara Luker

Autism: Turning on the Light: A Father Shares His Son’s Inspirational Life’s Journey through Autism by Keith Ambersley, eBook 2013; an Extended Review with < My Thoughts > by Sara Luker

Excerpts from the book – (3% indicates location in the Kindle version of the book, instead of page numbers).

Excerpts from the Preface of Turning on the Light, with < My Thoughts > by Sara Luker

3% My name is Aaron, and my diagnosis is pervasive developmental disorder (PDD). Generally PDD is readily defined as autism, which is a more recognizable term.

This cognitive and receptive disorder prevents me from processing information quickly and accurately with the addition of speech and language delays and attention deficit-hyperactivity disorder (ADHD).

Everything has to be explained to me at a slower pace so that I can make sense of it all. My dad says it’s not important when you get it, but more importantly that you get it!

I have many dreams, just like kids without this disability. My hope is to do my very best beyond autism. To be recognized for my ability and not for my inability.

5% My dad is writing this book for me to share my story. My story tells of the many obstacles, challenges, and success I’ve encountered on my journey down the road of autism.

I want each parent of an autistic child to realize that no matter how daunting and frustrating the task, nothing is impossible!

Each milestone and accomplishment, no matter how small, is a dream realized when put in the right context. I have a long way to go.

< My Thoughts > “Each milestone and accomplishments...”

Achieving a goal, meeting a milestone, and accomplishing even the smallest task, is huge. Really, it’s hard for someone who is not on the spectrum to appreciate what this population must overcome ‘thinking-wise’ in order to reach even the tiniest of goals.

In teaching special education students and/or high-risk students I have found that are three ‘hard to learn’ skills keeping them from reaching their goals. It’s hard to learn, or even to think about – how to PLAN, how to PREDICT, or how to recognize CONSEQUENCES.

5% However, every day leads me closer to realizing my ultimate dream of limiting the autistic restrictions and becoming more independent to the best of my ability.

< End of excerpts from the Preface of Turning on the Light >

< Excerpts from the Introduction of Turning on the Light >

5% Social change has moved the needle in a positive direction to preserve the right and dignity of children and adults with autism.

6% Our family has chosen the path of autism light, which enables and engages our son Aaron so that he can set goals, live his dreams, and exceed his expectations at his pace and on his terms.

Wherever his dream takes him, we are right there in his corner to support and encourage him on his journey, to enable him to pursue areas of interest not yet known to us.

His dreams could also take him to different countries and cultures. With today‘s technological advancements and the global community becoming a homogeneous network of people, this dream is both conceivable and possible.

We find ourselves helping each other in so many different ways. He helps me to think outside the box for creative solutions to help him navigate the basic fundamentals of communication and social behavior, which I have taken for granted all my life.

7% I had so many of my own dreams all lined up and ready to go for my son. Fate has changed that. My gift to my son is to support his dream wherever it takes him. This is the only dream that counts.

< My Thoughts > “I had so many of my own dreams all lined up and ready to go…”

Sicile-Kira (2014) confirms that… “The idea that this is not the life you dreamed of…not the family you had hoped for is sometimes more that can be borne.” “Feel angry! You have a right to be. Learn to refocus your anger…” “Planning should now be a part of your new life. All the decisions you make are about reaching the new dream or vision for the future.”

7% I have had the privilege to network, socialize, and even share experiences with other fathers. I must confess that I am deeply moved by the fathers I’ve come into contact with.

They display so much personal strength and character at a very stressful point in their own lives.

Amazingly, I have learned that there are other fathers who have managed to strike a balance between family, their personal well-being, and working twice as hard to make the best of a lifelong struggle with autism.

< My Thoughts > “…fathers who have managed to strike a balance...”

According to Kayfitz, et al. (2010) fathers raising children with intellectual disabilities, such as autism, reported more positive experiences than did the mothers. One of the reasons they gave was that the fathers in this study were encouraged by taking time to write about their positive experiences with their child. These fathers said that writing each day helped them to enhance the positive experiences and take the focus off of the more negative times.

8% Success is assured and becomes evident when autism is put into context. As a family we look at the future potential, not the current reality. With that in mind, anything is possible. My son is an example of this fact.

I want fathers raising a child with autism to know that ultimately their child like Aaron can exceed expectations. Reaching out to others is not just good for me but also serves as an example to my son.

Most of the ideas we’ve come up with are unique in helping our son to accomplish a particular goal at a particular moment in time. The goals we set are realistic and achievable.

< My Thoughts > “ realistic and achievable goals…”

I believe that both parents and teachers should have special ‘expectations’ for the child with ASD. Turning those expectations into realistic and achievable goals is the trick. This becomes easier when those goals also address the child’s strengths, interests, and even obsessions. This can make learning more enjoyable for everyone.

Remember that if ‘stretching’ the performance task doesn’t work this morning, it may work later in the day, or even tomorrow. One never really ‘gives up’ but instead tries a different way or presents at a different time. This requires part ‘salesmanship’, part ‘empathy’, and part ‘perseverance’.

8% Others are ‘stretch’ goals just to test how much and how far he can really go. We have discovered that true potential and capabilities are dormant until put to the test.

Our family belief is that we have been blessed with a once-in-a-lifetime opportunity to work with a blank script. We believe that autism can be challenged to create positive outcomes.

Like so many parents, I have spent a vast amount of time researching volumes of information on the cause and symptoms of autism as well as asking questions about possible cures.

A cure may not be available to help our son. However, we hope and pray a cure will eventually be discovered to help other children in times to come.

< My Thoughts > “asking questions about possible cures.”

The current mindset about autism seems to be heading more towards building on the child’s skills and talents instead of searching for a ‘cure’; especially for the older child or young adult. Even one of the nation’s leading non-profits, Autism Speaks, has dropped the word ‘cure’ from its mission statement. Professionals suggest finding ways to enhance life with friendships, acceptance, and finding skills which give purpose to the person’s day.

8% One positive change has been Aaron’s ability to communicate openly with his immediate and extended family.

It is a little awkward and sometimes embarrassing in public to correct Aaron when there is a need to turn an incident into a learning moment.

I used to be concerned about what other people might think if I corrected him for interrupting. The key is to redirect in a positive way…“Can we discuss this in a minute?”

< My Thoughts > “Can we discuss this in a minute?”

This is soooo true! Redirect… or distract… don’t react. Often times when we say to children of any age… “Do Not!” the negative disappears in translation. So, “Do NOT interrupt!” becomes… “DO interrupt!” The golden rule is to say what you want them to do… instead of using the negative. Also, try to connect with your child in an age appropriate way.

Another thought is that maybe you have been teaching ‘social skills’ and your child is just trying to get into the conversation by ‘interrupting.’ Just saying…

10% Positive reinforcements are by far the best and most effective tools to combat the many challenges to autism.

…helping my son enhance his strengths and unravel his potential so that he can be the best he can be.

Our goal is for him to be prepared and to become more of an independent individual who will find success beyond his limitations, success on his terms, not ours.

One of the most precious lessons learned is that it is important to stay focused on a set of goals and maintain a positive attitude no matter what happens on a daily basis.

< My Thoughts > “…setting goals…”

Retrieved from: http://autism.lovetoknow.com/Social_Skills_Activities_for_Kids_with_Autism?wb48617274=0F6E0D27. Kate-Miller-Wilson, author, photographer and mother of a son on the spectrum, talks about making goals an engaging session that feels like playtime. She believes that goals should center on skills that further academic development, communication, and social skills and reduce restrictive maladaptive behaviors.

Be prepared to get to know your child, and as Keith says he intends to… “…give it my full attention.” And, “enjoy the journey.”

10% As a father I continue to give it my full attention! My most important lesson learned as a father is anchored in the understanding that I need to “enjoy the journey,” not the destination.

Finding ways to make this a memorable journey has opened a window of opportunity for our family. We do everything together.

We golf, wash the car, vacuum the house, go grocery shopping, cut the lawn, and visit the less fortunate and the sick. This experience has opened a window for Aaron.

< My Thoughts > “…opened a window for Aaron.”

This father has found important ways to bringing his son into the world which surrounds him. By creating opportunities to make these social connections, dad is fighting one of the biggest enemies of ‘disabilities’ which is isolation. With isolation comes depression, anxiety, and frustration.

Matthews, et al. (2016) tell us that isolated young adults do not necessarily experience loneliness, but the isolation does influence feelings of depression. They go on to say that these individuals tend to adopt negative perceptions and expectations, which also influence those around them. This could lead them to becoming anxious and withdrawn, possibly even leading to an increase in maladaptive behaviors.

11% Our positive attitude enabled our family to get over the hump of desperation and helplessness to one of empowerment and engagement.

Time is of the essence, and there is never enough of it, especially in the early years of diagnosed autism.

Sometimes, I get to the point where I have to convince myself that it’s OK to be frustrated; then I can get over the frustration and move forward.

It’s really important to take some time out with each other as parents to recharge and energize.

< My Thoughts > “…take time out…”

Taking time out is essential to the longevity of the parents’ relationship. The constant ‘hyper vigilance’ and strict adherence to routine can erode a marriage. Even the parents in a typical family need a ‘date-night’ once in awhile. Smiles.

11% My recommendation for parents and caregivers would be to find an organization which provides “respite care.”

Searching on the internet under respite care will direct you to some good resources in your local and surrounding communities. Going out for a quiet dinner or a long drive prevents us from getting sucked into the daily grind…change focus, and celebrate together.

11% < My Thoughts > My recommendation for parents and caregivers would be to find an organization which provides “respite care.”

Respite care, even for a short period of time, can help everyone involved gradually build confidence. If you can, think about coaching a trusted person or two, to be there for you when you need them. Make the first time you ask someone to care for your child a very short period of time… with no mealtimes or medication times involved. You are gone briefly…then you are back…and you have been within reach the whole time. Gradually you begin extending the ‘away’ time to include meals, meds, bath time and nap time or bedtime. Also, think about when your child responds to change or learning best, morning or afternoon and use that to your advantage.

The first time we left Sonny with someone, we had planned to go to lunch at a nearby restaurant, but ended up grabbing a sandwich and sitting in the neighborhood park within sight of our house…my husband staring at his watch and me staring at my phone. This was a learning experience for both of us. I won’t fill you with illusions; trusting your child with a stranger for the first time is not easy. And, by the time you get everything ready for respite you are so exhausted and fearful that you want to call the whole thing off. See it through though, it will become easier and you will be glad you did.

12% A psychologist who evaluated my son shared with me that in a lot of patients he sees, he can immediately tell that the lights are out and there is “nobody home.”

That was a very profound statement that had me thinking, if the lights are out, what does it take to turn the lights on?

Autism is very unpredictable when looking ahead into the future. It is rather difficult to determine which of those autistic challenges and tendencies will stick for the rest of his life or gradually disappear over time…real change is possible and inevitable because corrective action can be taken now!

< End of excerpts from the Introduction >

< Excerpts from the book >

13% It’s Monday. The school bus should be arriving a 6:30am and school starts at 7:30, but a typical school day routine for my son starts at 4:00am.

It is difficult for Aaron to wake up on time every morning and get prepared for school. He tries very hard to get me to help him with this preparation so that he is not late for the bus. It was important for Aaron to get himself prepared on time on his own.

14% Our next goal is to go through the learning process associated with taking Aaron’s medication at a certain time every morning without fail so that he can perform better throughout the school day.

15% Timing when the (time-release) medicine is dispensed in the morning was difficult to estimate. Getting the medicine too early or late would impact his focus during the day.

Finally, we found a time which works successfully, and we have stuck with it ever since.

My lesson learned …that it is challenging to be consistent…I need to always collaborate with teacher to get better results. Being consistent and reinforcing the values that I feel are important for my child, such as (Aaron learning) time management and taking responsibility (to dress and take his medication), helps to take some of the pressure off me.

We measure success based on what is effectively managed at home; this automatically translates back to the time spent at school and his ability to stay on task and complete his core set of learning modules during a given day.

We are not working for perfection; we are working on continuous improvement.

< My Thoughts > We are not working for perfection; we are working on continuous improvement.

Helpful when one can have this epiphany, as it takes a lot of stress and pressure off of everyone. Sometimes it’s difficult to get all caregivers (parents and teachers) in agreement on the level of daily expectations. Case in point, when Sonny has had a ‘breakthrough’ seizure (that’s when his meds don’t hold) and his seizure causes noticeable damage to his general functioning afterwards, then our level of expectations change drastically.

17% …it dawned on me: Why worry about the things I cannot change? Just focus on changing the things I can. That was a big attitude adjustment for me as a parent of a child with autism.

We started to do things differently, including getting seats in a secluded area at restaurants. This helped to contain the behaviors and allowed us to enjoy a meal without the public scrutiny.

< My Thoughts > “… focus on the things I can change…”

Yes, pick your battles is my motto! We take along an iPad when we go out to a restaurant, putting on either Toy Story or Blues Clues for Sonny. It looks age appropriate and we can keep the sound down low because he knows the entire dialog by heart. Smiles.

17% We were afraid of making bad choices for our son at the beginning cycle of his school life, which we would have to live with for the rest of our lives.

We knew that there was a better school option for Aaron (than the one they were offered) and we were prepared to find it.

27% I am learning every day to get comfortable with autism being our new normal, be at peace with it and never stop pushing for continuous improvement. I do not have all the answers, but I will try to find them.

My real goal has always been to find a solution which works best for Aaron. Believe me, there is no “secret formula” to autism. The solution to autism has to be as unique as the child.

…he needs…time to fix the pieces and connect the dots in his own way, so that it makes sense and enables him to build greater self-confidence. Essentially I stopped doing everything for him. Coaching has been a very strong element to manage and retrain Aaron’s thinking, communication, and behaviors.

39% I have learned that it is so essential to recognize the importance and balance of a positive experience that includes challenging him without overwhelming him.

This keeps his level of motivation high so that he can feel compelled to challenge himself and push beyond his comfort zone.

43% Aaron has a special area that is dedicated for him to do his academic work at home. This area mimics his classroom setting in the home environment and is the only place in the house that when we go in there it’s all worktime.

< My Thoughts > …a “special area”

Creating a ‘special area’ for schoolwork is a very smart move. It also helps to have signals for ‘I need a break’, ‘I need a drink’, or ‘let’s negotiate time spent here’. Parents may even put a small trampoline in the room to use during a break or stressful time. Remember that at the end of a school day, some kids may not have any more to give.

43% It is such a great environment for us to provide him with the help and support he needs. His teachers are noticing the result of this extra help he is getting at home.

Creating small stretch goals over time was a good barometer to assess and test Aaron’s true potential to be his best.

The stretch goals started out as simple as writing a sentence then writing a paragraph then writing a chapter.

44% Early intervention was the beginning point for me. I never appreciated the value of early intervention until my wife explained it to me a couple of times.

45% The general rule of early intervention for children with autism is “the earlier, the better.” When in doubt, get your child diagnosed! Embark on an early intervention plan as soon as possible. This has been our motto from day one.

Early intervention is about doing a lot of homework to build awareness, then turning around and doing the work to make it come together in a meaningful and practical way.

A lot of the learning steps that I thought were so rudimentary I had to repeatedly rehearse again and again. It really is hands-on all the time, even when I did not have the energy and sometimes the patience for it.

Fathers can overcome the feeling of frustration by just stepping back go for a long drive, walk or just do something else to change the focus.

Early intervention is not an event you wait for to happen; it is a step that you have to plan around so that you can hit those critical milestones.

…mistakes are made because parents go to the first doctor, therapist, psychologist, specialist and we forget to get a second opinion to verify what we have been told. Always trust, but verify!

Essentially, early intervention is the interruption of delays in patterns of growth and development which are not consistent for the child’s age.

Research has documented that early intervention (after diagnosis) is critically important and is best engaged during a very short window of time for maximum results.

We did not have a clue at the beginning of this process! A lot of our efforts were ineffective. On many occasions we just had to rely on word of mouth from other parents in our network.

< My Thoughts > “…networking, second opinions, and trust but verify.”

These are words to live by. I would add to that ‘timing’. We were lucky to have mentioned to a doctor friend that Sonny wasn’t responding to the epilepsy medications he was taking. Our friend said that he had just come back from a convention where one of the speakers was a local neurologist. He remarked that “this guy was very impressive” and referred us to him. Timing was the magic ticket, so to speak. As soon as this doctor met Sonny and heard our description of symptoms, he knew that he had a more rare kind of epilepsy… Lennox-Gestaut Syndrome (LGS). He also just had word that the Food & Drug Administration (FDA) finally approved the only drug found to work to greatly relieve symptoms.

45% Sometimes it was just plain good fortune that we met the right people at the right time.

Some examples of taking advantage of early intervention opportunities for Aaron included finding a good speech and language pathologist and occupational therapist that works extensively and primarily with children with autism.

Finding a pediatrician is very important to build history with treating Aaron.

Now our son has a great foundation to build on. The best gift we could ever provide to our son was early intervention.

47% Early intervention is an expensive endeavor that requires a tremendous amount of time and resources to get the best results. By the time we had finished fighting with the insurance company, our son still started a bit late on his early intervention program.

In our opinion, it is so important to start intervention support services like Easter Seals and Oasis as soon as a diagnosis is made if there are no barriers or restrictions from the insurance companies.

Some insurance companies will not start payment until the child is in an active therapy or care program, thus delaying the entire process, especially if family funds are not readily available to go private.

‘Deep pockets.’ Start asking friends what they know, then local organizations and work outwards from there. Some parents are military and have found support there. Before you think you’re going to have to refinance your home, search for as many ‘deep pockets’ as you can. Finding funding for your child’s therapy and/or intervention can be a full time job. Check other states. Get on waiting lists. Sometimes you can even get the Attorney General’s Office involved.

47% Early intervention is not about finding just anyone to work with or support our child but finding someone with a passion for this line of work, (it) has to be more than a paycheck for them.

Meeting the insurance requirements was a continuous mountain of paperwork and endless phone calls. This is against the backdrop of having what I would consider very good insurance coverage.

…never let up on the gas. Don’t give the insurance a reason to limit your child’s benefits just because you did not utilize all the allocated sessions provided through your insurance.

Occupational therapy, physical therapy, speech and language, and social development were the four areas we targeted. We adapted our schedules to our son’s needs. These four windows of opportunity were the key to his long-term development.

< My Thoughts > Find out what the school provides… or can be pushed to provide…

Many with autism spectrum disorder (ASD) also have co-morbid conditions; meaning that there are often other underlying disorders which need to be medically treated. Try to get the diagnosis to cover a broad range, thus involving as many professionals as possible. For instance, in my son’s early diagnosis, I remembered seeing Cerebral Palsy (CP), so that became another financial angle to pursue. Of course his LGS symptoms looked like CP; nevertheless it helped us get in the door. Smiles.

48% Another lesson we learned through this process was the importance of having historical data, plus all current and past medical records in one place. If you move, it is essential and necessary to get copies of your child’s records… (it makes) the transition from one therapist to another easier.

< My Thoughts > “…your child’s records.”

Your child’s most valuable records may be those which reflect his or her diagnosis as designated in the current Diagnostic & Statistical Manual of Mental Disorders, simply known as DSM-V. Edition ‘V’ no longer refers to Asperger’s as separate from Autism Spectrum Disorder (ASD), but is noted as a ‘degree’ of ASD. For instance, it may be gauged by professionals as ‘#1-low, #2-moderate, or #3-severe’ in Social & Communication, and/or ‘#1-low, #2-moderate, or #3-severe’ in Restrictive, Repetitive Behaviors (RRB’s).So important that your child’s diagnosis reflects what s/he looks like… according to the DSM-V.

48% Because of a lack of adequate medical data, some therapists wanted to make their own evaluation, which resulted in more cost to us and could have been avoided. …this kind of rework took a lot of valuable therapy time away from Aaron.

In my experience, when parents move from school to school, county to county, state to state, or country to country without their own valuable copies of the child’s medical, school and social worker’s data and/or recommendations to share… precious time is almost always lost.

48% Our son went through a phase of repetitive tics and self-indulging behaviors. This was apparent if he was disinterested in the caregiver.

< My Thoughts > “…repetitive tics and self-indulging behaviors…”

After an extensive investigation, Gadow et al. (2010) found that certain gene architecture seems to be responsible for ‘repetitive tic’ behaviors, which are often produced when experiencing great anxiety and possibly co-occurring obsessive compulsive disorder.

48% Behavior modification has been a slow and painful process for all of us. Today most of these behaviors and symptoms have fully abated.

Now that we have passed over many of the inhibiting behaviors, other opportunities have emerged to help form Aaron’s character by sharpening his personality, individuality, and mindset.

Getting our son focused and exposed to art, science, various social settings, and extracurricular activities has been helpful to build team spirit, develop greater synergies with his peers, foster the ability to participate in team events, and bond and socialize with different people at all levels.

We are now seeing him develop an awareness that did not exist before. He is aware of a world outside himself and his place in it. This success is attributed to our focus on early intervention.

End of excerpts from the book with < My Thoughts > by Sara Luker

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More...< My Thoughts >

There is so much more to learn from Aaron’s story. Such as, advice about how to keep a ledger, deal with insurance companies, check state insurance, and school to work programs.“Nobody listens if we stay silent…” and other timely advice yet to be read in Aaron and Keith Ambersley’s informative book. =============References used in < My Thoughts > are: